A Road Less Travelled – Living with Neuroendocrine Cancer

Still lots to learn!

Its been a tiring and uncomfortable few weeks, and I am not to sure what the actual cause is, or if in fact it can be put down to any one thing. Partly I think it is down to the higher dose for my injection, it took me a good few months to get used to the original dose. Also establishing my Creon habit has been proving to be a bit of a challenge.

So I am sorry to admit that I have been very lazy and somewhat miserable, having had a lot of stomach cramps and bloating, that have required painkillers and heat packs to help ease things, together with frequent and urgent visits to the loo; and lots of broken sleep. Then to add insult to injury the morning nausea had returned too. The last time I felt this bad was early December, but it only lasted a couple of weeks that time. Thankfully though I think I may have turned the corner, I certainly hope so as I need my energy back. The gym is benefitting from my subscription but not my company…

On a happier note though it hasn’t all been doom and gloom, I have been spending time with my grandson, who is now nearly crawling. He has just about mastered reverse, so we now need to get the forwards motion going, which also means that child proofing is now a priority. He is a very contented little boy, and was charm itself when we went down to Trentham Gardens for lunch to celebrate his mums birthday.

Then it was time to travel up to the Christie for my CT scan, just as well I don’t mind aniseed as I do not think I would have been able to stomach the milkshake version. I must admit, the scan didn’t help my mood, as I had convinced myself that as I was feeling so down no news is good news. At least I only had a week to stew on it.

Luckily though I had the Easter weekend to take my mind off things, most of the family were here for Easter Sunday so I busied myself in the kitchen, which always relaxes me. I was very pleased with how the gluten free hot cross buns turned out, and the gluten free simnel cake. I had a go at Mary Berry’s pistachio and lemon meringue roulade to, it proved to be very popular, the bonus being two jars of home made lemon curd. I then converted an old cheese & onion tart recipe, which caused great amusement when Arthur was eating it, as he couldn’t get it in quick enough!!

We also had a quick Skype with the Canadian family to wish them Happy Easter, and they had had a bit of a party for our oldest daughter Ruth as she has been out there 10 years. She got an ice cream cake (ice cream having been on of her favourite foods since she was old enough to eat it!!) and fireworks.I remember dropping her off at the airport like it was yesterday, she was only supposed to be there for 12months😮

The Bank Holiday was a very lazy day for all concerned, this being encouraged by the weather, rain, hail and more rain. Then on the Tuesday my back went, I have not had any major problems with it for a couple of years, regular trips to the osteopath keep things in check. But this was proper full-on one leg in my pants and now I can’t move. The air did change colour, and that was me done for the day, I was also panicking as I was due back at the Christie for my results on the Wednesday. Thankfully I was mobile by the next morning, if a little wary, I managed to drive to Crewe to meet my husband before we carried on up to Manchester.

It was worth the visit, the news was much better than expected, not much change at all, so apart from my meeting with the surgeon I have a couple of months off until my liver MRI and results in June. My Creon has been increased, as my consultant also thinks that some of my discomfort could be down to a combination of getting used to taking it together with the higher dosage of my injection. So the Creon bottle now sits in the middle of the kitchen work top right in my eye-line, and I am getting better at remembering. But having read up on it I think the real challenge is tracking dosage per meal. There is a lot of information out there on Creon, but it is mostly very technical, also it can depends on what condition you are using it to treat, so it will be down to good old trial and error. I have been put on lanzoprazole to help reduce stomach acid, as the acid can make the pancreatic enzymes less effective. I have also purchased a nice pill box for my handbag, could do with a couple more though, just to be on the safe side😳

Now back to one of my favourite subjects, food. When I was in Edinburgh just after New Year, I had the best gluten free pizza I have had so far, you may remember that I mentioned it in my blog. The restaurant very kindly gave me the recipe, however it was on an industrial scale e.g. 10kgs of rice flour. Anyway, after downsizing it a bit I had a go at making it this last weekend, and it worked. I am not a massive pizza fan myself, but the rest of the family love it, especially my husband, so if I am going to be making it I am going to eat it. Over the last few years I have tried a good few recipes, and the main one I had settled on was made with buckwheat flour, or should I say was;-)

Finally I have been trying to keep my brain active, I managed 4 weeks of the ‘Critical & Logical Thinking’, meaning I got halfway through. I did quite enjoy it, but I really didn’t know how to treat some of the people that were participating. I know there are all sorts of personalities out there, but please read the course outline, do what is asked of you if you can and don’t make your comments personal, be kind. I didn’t get any personal comments, and one of the remits was to kind. For me personally though, I think it is the type of course that is best delivered in a classroom so as you can interact face to face, but overall life is to short, if you know what I mean. I was there to learn about constructive arguments, not to have one.

On the other hand, the ‘Anatomy of the Abdomen’ is really good, lots to take in, but very well delivered, and easy to follow. It has helped me to understand how everything fits together (how does it all fit in there?), how it works and which bit does what and why; I am definitely now better informed. I have my meeting with the surgeon next week, so I hope that it will help me in my discussions with him as well as future discussions with the rest of the medical team.

Hi Kath, great to read your blog again. You are such a strong and inspirational lady, even making jokes when things are tough! I am so glad that you have your wonderful and supportive family to help you through this – especially little Arthur, that face could lift anyone’s mood! He is adorable!
Lots of love, stay strong beautiful
Jane xxx

Super blog Kath, really enjoyed reading it, hopefully I will be back to full strength by next week, and be back on the scene, so to speak! This virus has really knocked me for six, and i have a lot of catching up to do, but glad I read your blog, xx

Glad you liked it Carole, and that the cold is on the way out. I find honey is brilliant for your cough especially if you can tolerate it with a whisky and lemon. Unfortunately I can’t do whisky anymore, much to Ade’s delight no more sharing of the single malts😉xx